Benefit set for baby battling rare disease

Published 8:13 am Friday, November 12, 2010

Evie Emanuel is a tough little scrapper.

She was diagnosed with Hirschsprung’s disease when she was born. Since then, she’s stayed at a hospital, lost her large intestine and part of her small intestine.

“She’s eight-and-a-half months old and she’s had five surgeries already,” said Brandon Emanuel, Evie’s father.

From left, Brandon, Evie, Christian and Stephanie Emanuel. Evie has Hirschsprung’s Disease, because of which she’s had five surgeries since she was born in March.

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Hirschsprung’s disease is an intestinal and bowel illness that affects a person’s ability to go to the bathroom, as their intestinal tract and bowels get blocked up, which can be lethal in extreme cases. While Evie’s family has dealt with Hirschsprung disease before with other family members, they weren’t prepared for how sick Evie was about to become.

Evie’s large intestine was taken out after she was born in March, but her parents noticed in August she wasn’t going to the bathroom properly. At that point, she was checked into the hospital for close to two months, as her small intestine became blocked. Doctors had to perform several surgeries on Evie, removing sections of her small intestine and then waiting to see if her system would become healthy or still remain infected.

During Evie’s stay in the hospital, Emanuel and his wife Stephanie were there as much as possible. The only time Emanuel went home was to sleep and work on the farm.

“We’d basically eat 100 percent of our meals up in Rochester,” Emanuel said. “We didn’t dare buy groceries for home. We didn’t know what was going on.”

Evie is safe and at home now, and although she can safely urinate in a diaper, she is connected to a colostomy bag for the time being. Emanuel said she’ll be doing fine in about six months, when doctors will reattach sections of her small intestine, allowing her to go to the bathroom normally.

There will be a breakfast and silent auction benefit for the Emanuels at St. John the Baptist Church Hall in Johnsburg on Sunday, Nov. 14, from 8 a.m. to noon. Free will donations are welcome, as well as any donations for the raffle and auction that will take place. The event is sponsored by the Catholic Aid Association, the Rose Creek Firemen and St. John’s Parish.

While baby Evie is doing fine for now, she’s learning to dread the recovery process. According to Emanuel, part of Evie’s recovery process is that she has to drink what is basically salt water every day to help her make waste, an activity that’s easier said than done.

“She knows when it’s coming, she just hates it,” Emanuel said. “And it’s not like I’m enjoying it either.”

What: Benefit for Evie Emanuel’s family
When: Sunday, Nov. 14 from 8 a.m. to noon
Where: St. John the Baptist Church Hall in Johnsburg